It's tread­ing on eggshells to make sure that there to ba­haviours

This week, Assem­bly Mem­bers will de­cide whether to take the first step to­wards a Bill which could see a pub­lished autism strat­egy in Wales to sup­port the 30,000 peo­ple here who live with the con­di­tion. Ruth Mos­al­ski re­ports

Western Mail - - AGENDA -

ONE per­son in ev­ery 100 in Wales has autism. Matthew is one of them.

Matthew is now 20, and lives with his mum Jill Grange in Brid­gend. Like many peo­ple with autism, Matthew’s con­di­tion is full of con­tra­dic­tions.

Matthew would strug­gle to walk down a cor­ri­dor as he’d be over­whelmed by the peo­ple and ex­pe­ri­ence but, he’s com­pletely at home on a quad bike or go kart.

Matthew shows many of the com­plex­i­ties of autism which are so hard for peo­ple to un­der­stand, whether med­i­cal pro­fes­sion­als, fam­i­lies, or peo­ple with autism them­selves.

Trys­tan James is 32. He has a rare ge­netic dis­or­der, epilepsy and a learn­ing dis­abil­ity. He finds it hard to be in large groups and needs 24/7 care at his Car­marthen­shire home.

His mum Marie ex­plains: “When­ever we are able to get out and about, it’s al­ways with an exit plan.”

Marie ex­plains autism as all en­com­pass­ing. “It af­fects ev­ery sec­ond of your day. It’s tread­ing on eggshells to make sure that there are no trig­gers to be­hav­iours.

Both mums be­lieve a spe­cific law is the only way to help their chil­dren and other peo­ple with autism.

Next week, Assem­bly Mem­bers will de­cide whether to take the first step to­wards the Autism (Wales) Bill.

The Bill will set in law that there has to be a pub­lished (and reg­u­larly as­sessed) autism strat­egy, as­sess­ments are car­ried out reg­u­larly, data is col­lected to plan ser­vices and there is suf­fi­cient train­ing for pro­fes­sion­als like teach­ers and GPs.

But as it stands, it’s un­likely the Bill will make it past its first hur­dle.

Since Septem­ber, ex­perts have been giv­ing ev­i­dence to AMs. Dur­ing those ses­sions, ex­perts from the Royal Col­leges of Nurs­ing, GPs, pae­di­atrics and child health as well as the Chil­dren’s Com­mis­sioner have all said leg­is­la­tion is not the an­swer.

Peo­ple like Jill and Marie say noth­ing else has worked and a law is the only re­sort.

A decade ago Jill wrote her first let­ter to the Na­tional Assem­bly ask­ing for help. They asked her to join a group work­ing out an Autis­tic Spec­trum Dis­or­der strat­egy.

The strat­egy thrashed out was called world-lead­ing. But when it was an­nounced, it wasn’t what they had hoped. “It wasn’t leg­is­la­tion but an ac­tion plan, it was wa­tered down,” Jill said.

She has now been in­volved in autism ser­vices in Wales for 16 years and says the ser­vices she had to fight for her son to get still aren’t eas­ily ac­ces­si­ble.

Marie agrees. Fam­i­lies were “re­ally ex­cited” there would be a strat­egy. “We felt Wales was lead­ing the way,” she said. “But my son is now 32, and it’s heart­break­ing par­ents of young chil­dren face sim­i­lar dif­fi­cul­ties.” So what went wrong?

For Marie it’s sim­ple: “How it has been im­ple­mented has been de­pen­dant on the peo­ple in each health board which means that it hasn’t been con­sis­tent across Wales. That’s why we want it to be a statute be­cause with­out that, noth­ing is set in stone.”

Over the past months, AMs in Cardiff Bay have been hear­ing ev­i­dence.

Those op­pos­ing the Bill say that it is too di­ag­nos­tic-led, and could take care away from peo­ple who need it.

The Welsh Gov­ern­ment say it has other schemes to help peo­ple with autism and health min­is­ter Vaughan Gething doesn’t think sep­a­rate leg­is­la­tion is needed. In Septem­ber he pub­lished an up­dated Autis­tic Spec­trum Dis­or­der Strat­egy de­liv­ery plan he said would im­prove ser­vices.

But the Na­tional Autis­tic So­ci­ety Cymru and Autis­tic Spec­trum Con­nec­tions Cymru want the leg­is­la­tion.

Con­ser­va­tive Pre­seli Pem­brokeshire AM Paul Davies made autism the sub­ject of his Pri­vate Mem­bers Bill.

“The pur­pose of my Bill is so ser­vices are put on a statu­tory foot­ing to make sure that there’s a clear and con­sis­tent path­way of the di­ag­no­sis of autism, and health­boards and lo­cal au­thor­i­ties can plan by col­lect­ing ap­pro­pri­ate data.”

“The Gov­ern­ment has in­di­cated it will in­tro­duce in­te­grated autism ser­vices which will bring cer­tain mea­sures but I still be­lieve leg­is­la­tion will en­sure ser­vices will be on a statu­tory foot­ing and there will be con­sis­tency.”

Jane Har­ris from NAS Cymru told the com­mit­tee autis­tic peo­ple and fam­ily mem­bers are hav­ing “dis­tress­ing ex­pe­ri­ences on a daily ba­sis”.

“More peo­ple are say­ing that they’re wait­ing too long for di­ag­no­sis. More peo­ple are say­ing that they’re not get­ting the sup­port that they need after di­ag­no­sis. And we re­ally need to see a push from Gov­ern­ment.”

Some go fur­ther. Gareth Mor­gan from ASCC told the com­mit­tee that the ex­ist­ing pro­grammes Vaughan Gething praises are too “top down”.

“We have very good re­la­tion­ships with the in­te­grated autism ser­vices across south Wales. There are some very tal­ented mem­bers of staff, but the job they are be­ing asked to do on the ground is dif­fer­ent from what Welsh Gov­ern­ment say they are do­ing.”

ASCC, based in Cardiff, sup­ports 800 adults with ASD.

Mr Mor­gan told the com­mit­tee peo­ple with autism are un­able to ac­cess as­sess­ment through so­cial ser­vices, de­spite as­sur­ances, be­cause they present as though they are cop­ing in­de­pen­dently. “Es­sen­tially, if that per­son can get up in the morn­ing and they can wash them­selves, they will not get through to an as­sess­ment.”

For Jill autism needs to be de­fined as both a med­i­cal or so­cial con­di­tion. “We got the med­i­cal di­ag­no­sis but 18 months later the con­sul­tant dis­charged Matthew from the clinic.” Her feel­ing was she was be­ing left alone.

An­other crit­i­cism of the pro­posed leg­is­la­tion is there are many med­i­cal con­di­tions where those with the con­di­tion need statu­tory help. For Mr Davies, the re­sponse is sim­ple, he is be­ing lob­bied for an Autism Bill.

“By not al­low­ing this Bill to go for­ward, I think we’ll let thou­sands and thou­sands of peo­ple down be­cause there’s thou­sands of peo­ple out there who are re­ly­ing on this Bill”

Jill, who has a back­ground in teach­ing and nurs­ing, agrees. “I can speak with au­thor­ity on health con­di­tions. If you have can­cer, for ex­am­ple, there’s a path­way that you can fol­low.

“If you have got a hid­den dis­abil­ity like autism, you can’t see the way that per­son is pro­cess­ing in­for­ma­tion, there’s no anti-autism med­i­ca­tion. It is life­long, and it af­fects ev­ery­thing. That’s why this needs leg­is­la­tion. We need to know as we get older our kids are go­ing to be looked after and not locked up in an in­sti­tu­tion”.

But that’s not a view held by ex­pert groups. The Royal Col­lege of Gen­eral Prac­ti­tion­ers says it has con­cerns the Bill would “lead to di­ag­no­sis-based ser­vices, in­stead of ser­vices that are needs-based and per­son-cen­tred”.

The Royal Col­lege of Nurs­ing agreed. “There is a strong case that re­sources and sup­port should be de­vel­oped and de­liv­ered ac­cord­ing to the needs of the in­di­vid­ual.”

There needs to be bet­ter ser­vices for peo­ple with Autism Spec­trum Dis­or­der (ASD), the Welsh NHS Con­fed­er­a­tion said, but added it did not know if the pro­posed leg­is­la­tion “would be the most ap­pro­pri­ate ve­hi­cle to achieve the de­sired out­comes”.

They also feared that be­cause the symp­toms of autism, par­tic­u­larly in chil­dren, are com­mon to other con­di­tions, fam­i­lies of in­di­vid­u­als would feel the only way they could help would be for an autism di­ag­no­sis.

De­spite their ob­jec­tions, Mr Davies be­lieves leg­is­la­tion is the only an­swer.

Plaid Cymru AM He­len Mary Jones sits on the health com­mit­tee De­spite a pro­fes­sional back­ground in chil­dren and adults with ad­di­tional needs, she did not think a law would help. But, her opin­ion was changed dur­ing the ev­i­dence she heard.

Ms Jones’ ar­gu­ment is there are too many sto­ries of peo­ple who have par­tic­i­pated in con­sul­ta­tions, de­bates, re­ports, and not got any­where.

The com­mit­tee could not con­sen­sus on the leg­is­la­tion.

What they did agree was there was an “ur­gent need to im­prove the pro­vi­sion of sup­port ser­vices across Wales.

As it stands, the Bill will not get to its next stage as it doesn’t have Vaughan Gething’s sup­port.

Mr Davies said: “I will be ab­so­lutely frus­trated and, to be hon­est, an­gry, if this piece of leg­is­la­tion isn’t al­lowed to go for­ward for fur­ther scru­tiny.”

If the Bill doesn’t get to its next stage on Wed­nes­day it will just live up to the po­lit­i­cal will peo­ple like Jill have seen for decades. “The politi­cians don’t give a damn. It prob­a­bly won’t go through.

Marie agrees: “If it doesn’t go through it will dev­as­tate the autism com­mu­nity again. As a mum, it would be bit­terly dis­ap­point­ing that other fam­i­lies will have to go through the same dif­fi­cul­ties to get ba­sic sup­port.”

The Welsh Gov­ern­ment says im­prove­ments can be achieved in ways other than leg­is­la­tion.

A spokesman said: “We share the as­pi­ra­tions of the Bill about the need to im­prove the ser­vices avail­able for peo­ple with autism and we are work­ing hard with the NHS and other part­ners and in­vest­ing £13m to de­liver an in­te­grated autism ser­vice avail­able through­out Wales. We are also con­sult­ing on a statu­tory code to im­prove ac­cess to care and stan­dards for peo­ple with autism and ASD.

“We have been clear from the out­set that there are other ways of achiev­ing im­prove­ments than leg­is­la­tion, which has the po­ten­tial to di­vert re­sources away from sup­port ser­vices peo­ple with autism and their fam­i­lies need. These re­forms must be given the op­por­tu­nity to prove their worth, or oth­er­wise, be­fore we move to leg­is­late for change.”

■ For the full ver­sion of this ar­ti­cle, go to waleson­ reach

> Jil­lian Grange, of Brid­gend, with son Matthew who has autism

> Marie James and her son Trys­tan

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